Childhood Cancer Report on Cancer Statistics in Alberta. December Cancer Care. Cancer Surveillance

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1 December 12 1 Report on Cancer Statistics in Alberta

2 Acknowledgements 2 This report was made possible through Alberta Health Services,, and the many contributions of staff and management across Alberta Health Services as well as external agencies and individuals. The authors wish to thank individuals working in the following AHS departments and partner agencies for their contributions to this report: Alberta Cancer Registry, Surveillance and Health Status Assessment, Alberta Health and Statistics Canada. Contributions included provision of information, analysis and interpretation, and assistance with consultation sessions and communication of the report. Report Editor: Dr. Juanita Hatcher, Director, Project Coordinator: Barry Obondo, Information Dissemination Coordinator Analysis and Review: Amy Colquhoun, Epidemiologist Halim Elamy, Surveillance Analyst Li Huang, Senior Surveillance Analyst Anthony Karosas, Surveillance Analyst Dr. Fengxiao Li, Survey Analyst Andrew Min, Assistant Programmer Analyst Chris Normandeau, Project Lead Tyler Pittman, Survey Analyst Dr. Zhenguo Qiu, Biostatistician Marjan Rekabdar, Surveillance Analyst Janine Schouten, Environmental Exposure Analyst Mengzhe Wang, Manager, Analytical Team Jing Yang, Clinical Data Analyst Yufei Zheng, Surveillance Analyst Practicum Student Design Assistance: Ashley Lakusta, Administrative Support III Suggested Citation: : 1 Report on Cancer Statistics in Alberta. Edmonton:, Alberta Health Services, 12. For More Information: Visit our website:

3 Table of Contents 3 Purpose of the Report 4 Navigating the Report 4 Data Notes 4 Summary 5 in Alberta 6 Prevalence 7 Incidence and Mortality Counts 7 Incidence and Mortality Rates 9 Observed Survival 13 Further Information 15 References 16 Contact Information 16

4 4 Purpose of the Report is a specialized team within Alberta Health Services,, that actively contributes to Alberta Health Service s goal of creating the best-performing publicly funded health system in Canada. This is accomplished by conducting cancer surveillance through the collection, integration, analysis and dissemination of cancer related data and information. The report is designed to provide comprehensive and detailed information regarding cancer in Alberta. It will help support health professionals, researchers and policy makers in the planning, monitoring and evaluation of cancer-related health programs and initiatives. It will also be a useful education tool for the general public and media. Navigating the Report This document provides information on childhood cancer statistics in Alberta. Details about individual cancer types are available within separate documents. The words highlighted in dark blue are terms described in detail in the Glossary within the Appendix document. Data Notes In this document, the term cancer refers to invasive cancers unless otherwise specified. It is important to note that this document contains both actual and estimated data; distinctions are made where applicable. The numbers published in this report should be considered provisional, as a few cases and deaths may be registered in subsequent years. The data in this report reflect the state of the Alberta Cancer Registry as of July 31, 12. Incidence rates presented in this document exclude basal and squamous skin cancer cases. Although approximately 3% of the malignant cancers diagnosed among Albertans each year are basal and squamous skin cancers, these tumours are generally not life-threatening and are inconsistently reported and coded across registries; therefore basal and squamous skin cancers are rarely included in cancer registry reports. For detailed descriptions about data sources and how they affect data presented in this report, please see the Appendix document.

5 5 Summary In 1, 13 children aged to 14 years old were diagnosed with cancer in Alberta. Between 6 and 1, the most common childhood cancers were leukemias (31%), central nervous system tumors (%), lymphomas (12%), neuroblastomas (7%), and renal tumors (7%). In 1, 14 children aged to 14 years old died from childhood cancer in Alberta. Between 6 and 1, the most common cancer causes of death in children were central nervous system tumors (37%), leukemias (31%), and neuroblastomas (8%). As of December 31, 1, approximately 68 children aged to 14 years were alive who had previously been diagnosed with cancer in Alberta and about 24 Albertans aged to 99 were survivors of childhood cancer. Since 199, childhood cancer incidence rates have increased for children aged to 14 years old. Since 199, childhood cancer mortality rates have been stable for children aged to 14 years old. Five-year observed survival rate for all childhood cancers diagnosed between 1 and 5 in Alberta is 83%. In 1, 13 children aged to 14 years old were diagnosed with cancer in Alberta. Between 6 and 1, the most common childhood cancers were leukemias, central nervous system tumors, lymphomas, neuroblastomas, and renal tumors. *Year range represents the period over which the most recent significant trend was observed.

6 6 in Alberta Childhood cancers are relatively rare in Alberta. In this report, childhood cancers are defined as invasive cancers that are diagnosed in children up to and including the age of 14. Childhood cancers accounted for.7% of all new cancer cases diagnosed in Alberta in 1. Although childhood cancers are rare, they have a profound impact on families and communities. In addition, childhood cancer survivors are more likely to develop additional cancers as they grow older. 1 Childhood cancers are classified differently than adult cancers. As with adults, the classification of childhood cancer is based on both tumor morphology and cancer site. However, greater emphasis is placed on morphology rather than site, as compared to adults where greater emphasis is placed on site. In this report, childhood cancers are classified according to the International Classification of, Third Edition 2. The following table (Table 14-1) provides an overview of childhood cancer incidence and mortality in Alberta. Explanations and further details on New Cases, Five-Year Average Age-Standardized Incidence Rates, Deaths, Five- Year Average Age-Standardized Mortality Rates and Five- Year Observed Survival Rate can be found in the relevant sections of this report. Table 14-1: New Cases and Deaths and Five-Year Average Age-Standardized Incidence Rates (ASIRs) and Mortality Rates (ASMRs), Ages -14, Alberta, 6-1 Diagnostic Group New Cases ASIRs Deaths ASMRs Total s* I. Leukemia a. Lymphoid b. Acute Myeloid II. Central Nervous System a. Ependymoma b. Astrocytoma c. Intracranial & Intraspinal Embryonal III. Lymphoma a. Hodgkin Lymphoma b. Burkitt Lymphoma c. Non-Hodgkin Lymphoma IV. Neuroblastoma & Other PNC a. Neuroblastoma & Ganglioneuroblastoma V. Soft Tissue a. Rhabdomyosarcoma VI. Renal Tumours a. Nephroblastoma VII. Malignant Bone VIII. Other Malignant Epithelial IX. Germ Cell Tumours and Other Gonadal Standardized to 1991 Canadian Population ASIR and ASMRs are rates per 1,, * New cases and deaths from aggregated sites may not add up to the total number of childhood cancers because hepatic tumors, retinoblastoma, other and unspecified malignant neoplasms, and not classified cancers were omitted from the table Data Sources: Alberta Cancer Registry, Alberta Health

7 7 Prevalence The prevalence of a disease is defined as the number of people alive at a given time point who had been previously diagnosed with that disease. In this section of the report, the cancer prevalence is presented in two ways: the number of children (-14 years old) alive as of December 31, 1 who had ever been diagnosed with cancer, and the number of people aged -99 years who had ever been diagnosed with cancer in childhood (aged -14 years). Prevalence is a useful indicator of the impact of cancer on individuals, the healthcare system and the community as a whole. Although many cancer survivors lead healthy and productive lives, the experience can have a strong impact on the physical and emotional well-being of individuals and their families. The cancer experience can also result in the continued use of the healthcare system through rehabilitation or support services, as well as loss of work productivity that can affect the whole community. Incidence and Mortality Counts Incidence counts are the number of new cancer cases diagnosed during a specific time period in a specific population. In this section of the report, incidence counts refer to the number of new childhood cancers (children aged -14) diagnosed in Albertan residents between 6 and 1. Mortality counts describe the number of deaths attributed to childhood cancer during a specified period of time in a specific population. In this section of the report, mortality counts refer to the number of deaths due to childhood cancer (children aged -14) in Albertan residents between 6 and 1, regardless of the date of diagnosis. The following two figures illustrate the proportion of new cancer cases and cancer deaths by cancer type. In 1, the total number of children living in Alberta is approximately 77,7 3 or about one fifth of the Alberta population. As of December 31, 1, approximately 68 children (-14 years old) were alive who had previously been diagnosed with cancer. Also about 2,4 Albertans aged to 99 had survived a childhood cancer.

8 Figure 14-1: New Cancer Cases, Ages -14, Alberta, 6-1 Figure 14-2: Deaths, Ages -14, Alberta, Soft tissue and other extraosseous sarcoma, 5% Neuroblastoma and other peripheral nervous cell tumors, 7% Renal tumors, 7% Malignant bone tumors, 4% Germ cell tumors, trophoblastic tumors, and neoplasms of gonads, 4% Other malignant epithelial neoplasms and malignant melanoma, 4% Retinoblastoma, 3% Hepatic tumors, 2% Other - Not Classified by ICCC and Other and unspecified malignant neoplasms, 1% Lymphomas and reticuloendothelial neoplasms, 3% Soft tissue and other extraosseous sarcoma, 4% Hepatic tumors, 4% Malignant bone tumors, 3% Other malignant epithelial neoplasms and malignant melanoma, 3% Renal tumors, 3% Germ cell tumors, trophoblastic tumors, and neoplasms of gonads, 2% Lymphomas and reticuloendothelial neoplasms, 12% Leukemias, myeloproliferative diseases, and myelodysplastic diseases, 31% Neuroblastoma and other peripheral nervous cell tumors, 8% CNS and miscellaneous intracranial and intraspinal neoplasms, 37% CNS and miscellaneous intracranial and intraspinal neoplasms, % Leukemias, myeloproliferative diseases, and myelodysplastic diseases, 31% Data Source: Alberta Cancer Registry Between 6 and 1, a total of 527 childhood cancer cases were diagnosed among Albertan residents. The most commonly diagnosed childhood cancers were leukemia (31%), central nervous system cancers (%), and lymphoma (12%); these cancers accounted for 63% of all childhood cancers (Figure 14-1). Of the 162 childhood leukemia diagnoses, 129 cases (8%) were lymphoid leukemia and 21 cases (13%) were acute myeloid leukemia. Of the 64 children diagnosed with lymphoma, 25 cases (39%) were Hodgkin lymphoma, 6 cases (9%) were Burkitt lymphoma, and 24 cases (38%) were non-hodgkin lymphoma. Data Source: Alberta Cancer Registry Of the 91 childhood cancer deaths between 6 and 1, 37% were attributable to central nervous system cancers, 31% to leukemia and 8% to neuroblastoma (Figure 14-2). These three cancers account for 76% of all childhood cancer deaths.

9 9 Incidence and Mortality Rates Incidence rates for childhood cancers are the number of new cancer cases diagnosed per 1,, population in a specific time period. Mortality rates for childhood cancers are the number of deaths per 1,, population in a specific time period. In order to compare cancer incidence or cancer mortality over time or between populations, age-standardized incidence rates (ASIRs) or agestandardized mortality rates (ASMRs) are presented. These are weighted averages of age-specific rates using a standard population to determine weights. These rates are useful because they are adjusted for differences in age distributions in a population over time, which permit comparisons of cancer incidence or mortality among populations that differ in size, structure and/or time period. ASIRs and ASMRs give the overall incidence and mortality rates that would have occurred if the childhood population of Alberta had been the same as the childhood standard population. In this report the Canadian 1991 population is used as the standard population. Incidence and mortality can be affected by a variety of factors; implementation of public health prevention or screening strategies that either prevent disease or find cancer in its early stages when treatment is generally more successful, the development of cancer treatment programs that may impact chances of survival, and research innovations. The following figures show incidence and mortality trends for childhood cancers (children aged -14) in Alberta. Separate analyses for both incidence and mortality are shown in subsequent sections. The statistical significance of the trends was determined by using Joinpoint 4 method and is described in the text accompanying each graph. Joinpoint models are based on yearly age-standardized rates; hence there may be slight differences in the rates presented in the text (from Joinpoint model) and the graphs (where ASIRs and ASMRs are shown as three-year moving averages). Three-year moving averages are used to smooth out year-to-year fluctuations so that the underlying trend may be more easily observed. They are calculated based on aggregating three years of data by age group. Agestandardized incidence rates (ASIRs) and age-standardized mortality rates (ASMRs) are presented as three-year moving averages. This smoothing of trends is especially important when the number of cancer cases per year is relatively small, where year-to-year variability can be quite large.

10 Rate per 1,, Rate per 1,, Report on Cancer Statistics in Alberta Figure 14-3: Age-Standardized Incidence Rates (ASIRs) * and Mortality Rates (ASMRs) * and 95% Confidence Intervals (CI) for, Ages -14, Both Sexes Combined, Alberta, Figure 14-4: Age-Standardized Incidence Rates (ASIRs) * and Mortality Rates (ASMRs) * and 95% Confidence Intervals (CI) for, Ages -14, Males, Alberta, ASIR ASMR 14 1 ASIR ASMR Year Year * Three year moving averages Standardized to 1991 Canadian Population; ASIRs and ASMRs are rates per 1,, * Three year moving averages Standardized to 1991 Canadian Population; ASIRs and ASMRs are rates per 1,, Data Sources: Alberta Cancer Registry, Alberta Health Childhood cancer ASIRs have increased significantly since 199 (Figure 14-3). From 199 to 1, childhood cancers ASIRs in both sexes combined have increased significantly by 1.2% annually. In 9, the three-year average ASIR for childhood cancer in both sexes combined was 149 per 1,, childhood population. Childhood cancer ASMRs in both sexes combined have not changed significantly since 199 (Figure 14-3). In 9, the three-year average ASMR for childhood cancer in both sexes combined was 23 per 1,, childhood population. Data Sources: Alberta Cancer Registry, Alberta Health Childhood cancer ASIRs for males have increased significantly since 199 (Figure 14-4). From 199 to 1, childhood cancer ASIRs in males have increased significantly by 1.2% annually. In 9, the three-year average ASIR for childhood cancer in males was 164 per 1,, male childhood population. Childhood cancer ASMRs in males have not significantly changed since 199 (Figure 14-4). In 9, the three-year average ASMR for childhood cancer in males was 26 per 1,, male childhood population.

11 Rate per 1,, Rate per 1,, Report on Cancer Statistics in Alberta 11 Figure 14-5: Age-Standardized Incidence Rates (ASIRs) * and Mortality Rates (ASMRs) * and 95% Confidence Intervals (CI) for, Ages -14, Females, Alberta, Figure 14-6: Age-Standardized Incidence Rates (ASIRs) * and Mortality Rates (ASMRs) * and 95% Confidence Intervals (CI) for Childhood Leukemia, Ages -14, Both Sexes Combined, Alberta, ASIR ASMR 6 ASIR ASMR Year Year * Three year moving averages Standardized to 1991 Canadian Population; * Three year moving averages Standardized to 1991 Canadian Population; ASIRs and ASMRs are rates per 1,, ASIRs and ASMRs are rates per 1,, Data Sources: Alberta Cancer Registry, Alberta Health Childhood cancer ASIRs for females have not significantly changed since 199 (Figure 14-5). In 9, the three-year average ASIR for childhood cancer in females was 134 per 1,, female childhood population. Childhood cancer ASMRs for females have not significantly changed since 199 (Figure 14-5). In 9, the three-year average ASMR for childhood cancer in females was 19 per 1,, female childhood population. Data Sources: Alberta Cancer Registry, Alberta Health Childhood leukemia ASIRs in both sexes combined have not significantly changed since 199 (Figure 14-6). In 9, the three-year average ASIR for childhood leukemia in both sexes combined was 39 per 1,, childhood population. Childhood leukemia ASMRs in both sexes combined have not significantly changed since 199 (Figure 14-6). In 9, the three-year average ASMR for childhood leukemia in both sexes combined was 7 per 1,, childhood population.

12 Rate per 1,, Rate per 1,, Report on Cancer Statistics in Alberta Figure 14-7: Age-Standardized Incidence Rates (ASIRs) * and Mortality Rates (ASMRs) * and 95% Confidence Intervals (CI) for s of the Central Nervous System, Ages -14, Both Sexes Combined, Alberta, Figure 14-8: Age-Standardized Incidence Rates (ASIRs) * and Age-Standardized Mortality Rates (ASMRs) * and 95% Confidence Intervals (CI) for Childhood Lymphoma, Ages -14, Both Sexes Combined, Alberta, ASIR ASMR 6 ASIR ASMR Year Year * Three year moving averages Standardized to 1991 Canadian Population; ASIRs and ASMRs are rates per 1,, * Three year moving averages Standardized to 1991 Canadian Population; ASIRs and ASMRs are rates per 1,, Data Sources: Alberta Cancer Registry, Alberta Health Childhood CNS cancers ASIRs have increased significantly since 199 (Figure 14-7). From 199 to 1, childhood CNS cancer ASIRs in both sexes combined have increased by 1.8% annually. In 9, the three-year average ASIR for childhood cancers of the central nervous system (CNS) in both sexes combined was 35 per 1,, childhood population. Childhood CNS cancers ASMRs in both sexes combined have not significantly changed since 199 (Figure 14-7). In 9, the three-year average ASMR for childhood cancers of the CNS in both sexes combined was 1 per 1,, childhood population. Data Sources: Alberta Cancer Registry, Alberta Health Childhood lymphoma ASIRs in both sexes combined have not significantly changed since 199 (Figure 14-8). In 9, the three-year average ASIR for childhood lymphoma in both sexes combined was 17 per 1,, childhood population. Childhood lymphoma ASMRs trends in both sexes combined have not significantly changed since 199 (Figure 14-8). There were no deaths due to childhood lymphoma between 8 and 1. Therefore, the three-year average ASMR for childhood lymphoma in both sexes combined was per 1,, childhood population.

13 Relative Survival (%) Report on Cancer Statistics in Alberta 13 Survival The observed survival proportion (OSP) describes the proportion of children diagnosed with a specific cancer who survived through the specified time period. Observed Survival Proportions are estimated by the cohort method when complete follow-up data (e.g., at least five years of follow-up to estimate five-year rate) after diagnosis are available. Children whose cancer was only identified through death certificate were excluded from the calculation. Survival depends on several factors including the cancer type (most importantly site, morphology and stage at diagnosis), sex, age at diagnosis, health status and available treatments for that cancer. Figure 14-9: Observed Survival Proportions* and 95% Confidence Intervals (CI) for, Both Sexes Combined, Ages -14, Alberta, , 1996-, year 3 year 5 year Years After Diagnosis * Ratios calculated by cohort method, where complete follow-up data are available. Data Sources: Alberta Cancer Registry, Statistics Canada Five-year observed survival proportions for Alberta children diagnosed with cancer in both sexes combined have not changed since In 1-5, five year observed survival was 83% (Figure 14-9).

14 Relative Survival (%) Relative Survival (%) Report on Cancer Statistics in Alberta 14 Figure 14-1: Observed Survival Proportions* and 95% Confidence Intervals (CI) for, Males, Ages -14, Alberta, , 1996-, 1-5 Figure 14-11: Observed Survival Proportions* and 95% Confidence Intervals (CI) for, Females, Ages -14, Alberta, , 1996-, year 3 year 5 year year 3 year 5 year Years After Diagnosis Years After Diagnosis * Ratios calculated by cohort method, where complete follow-up data are available. * Ratios calculated by cohort method, where complete follow-up data are available. Data Sources: Alberta Cancer Registry, Statistics Canada Five-year observed survival proportions for males diagnosed with childhood cancer have not changed since In 1-5, five year observed survival for males diagnosed with childhood cancer was 84% (Figure 14-1). Data Sources: Alberta Cancer Registry, Statistics Canada Five-year observed survival proportions for females diagnosed with childhood cancer have not changed since In 1-5, fiveyear observed survival for females diagnosed with childhood cancer was 82% (Figure 14-11).

15 Further Information Further information is available on a separate document, the Appendix: Appendix 1: Glossary Appendix 2: Cancer Definitions Appendix 3: Data Notes 15

16 References Olsen J, Moller T, Anderson H, Langmark F, Sankila R, Tryggvadottir L, Winther J, Rechnitzer C, Jonmundsson G, Christensen J, Garwicz S. Lifelong Cancer Incidence in 47,697 Patients treated for childhood cancer in the Nordic countries. 9;11(11): Steliarova-Foucher E, Stiller C, Lacour B, Kaatsch P. International Classification of. Third Edition. Cancer 5, 13, Alberta Population Data [Excel Spreadsheet]. Edmonton (Alberta): Alberta Health; Kim H-J, Fay M, Feuer E. Permutation tests for JoinPoint regression with applications to cancer rates. Stat. Med. ; 19: Contact Information If further information is required, please contact, Alberta Health Services as follows: Mailing Address: Alberta Health Services Street Edmonton, AB, Canada T5J 3H1 Phone: Fax: ACB.surveillance@albertahealthservices.ca

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